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  • Contact | Global Foundation For Peroxisomal Disorders
    help support our cause Every little bit helps Contact 5147 S Harvard Avenue Suite 181 Tulsa OK 74135 contactus thegfpd org fax 918 516 0227 We d love to hear from you Please feel free to contact our Board of Directors with your questions or comments Shannon Butalla President shannon thegfpd org 402 429 5650 Anne Park Hopkins Vice President annepark thegfpd org Melissa Bryce Gamble Treasurer melissa thegfpd org

    Original URL path: http://www.thegfpd.org/contact (2015-03-27)
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  • Information for professionals | Global Foundation For Peroxisomal Disorders
    newsletter Join our support group and be connected with other families Make a donation to help support our cause Every little bit helps For Professionals GFPD Medical and Scientific Advisory Board Dr Gerald Raymond M D Kennedy Krieger Institute Dr Nancy Braverman M D McGill University Dr William Rizzo M D University of Nebraska Medical Center Dr Steve Steinberg Ph D Kennedy Krieger Institute Dr S Ali Fatemi M D

    Original URL path: http://www.thegfpd.org/for-doctors (2015-03-27)
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  • For Families | Global Foundation For Peroxisomal Disorders
    Conferences 2015 Conference 2013 Conference 2012 Conference 2011 Conference Medical and Research Information Family Stories Support Groups Resources Registry Equipment Exchange Donate Make a Donation Fundraising Events Fundraising Resources Shop Blog Contact Become a member of GFPD to receive our quarterly newsletter Join our support group and be connected with other families Make a donation to help support our cause Every little bit helps For Families Introduction letter Medical directory

    Original URL path: http://www.thegfpd.org/for-families (2015-03-27)
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  • Donate | Global Foundation For Peroxisomal Disorders
    a Donation Fundraising Events Fundraising Resources Shop Blog Contact Become a member of GFPD to receive our quarterly newsletter Join our support group and be connected with other families Make a donation to help support our cause Every little bit helps Donate Donations can be made online via PayPal or mailed to The Global Foundation for Peroxisomal Disorders 5147 South Harvard Avenue Suite 181 Tulsa OK 74135 The Global Foundation

    Original URL path: http://www.thegfpd.org/donate (2015-03-27)
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  • GFPD Awards Four Grants | Global Foundation For Peroxisomal Disorders
    projects in the field of peroxisomal disorders Dr Nancy Braverman of McGill University in Montreal Canada was awarded 10 875 00 for the Canadian arm of a project entitled A Pilot Mult Center Open Label Trial Assessing the Safety and Efficacy of Betaine in Children with Peroxisome Biogenesis Disorders Dr William Rizzo of the University of Nebraska Medical Center was awarded 25 000 for the U S arm of the project entitled A Pilot Open Label Trial Assessing the Safety and Efficacy of Betaine in Children with Peroxisome Biogenesis Disorders Dr Joseph Hacia of the University of Southern California was awarded 50 000 for his project entitled Neural Cell Resources for PBD ZSD Drug Testing Dr Steven Steinberg of Kennedy Krieger Institute in Maryland was awarded 25 000 for his project entitled Pilot Treatment of the PEX1 G844D Mouse with Diosmetin Grant recipients in attendance at the 2013 GFPD Family and Scientific Conference in Lincoln Nebraska last month were presented with their awards at the opening ceremonies The GFPD is excited to take this opportunity to help move the science of peroxisomal disorders forward in ways that might improve therapeutic options for patients with Peroxisome Biogenesis Disorders in the Zellweger

    Original URL path: http://www.thegfpd.org/gfpd-awards-four-grants (2015-03-27)
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  • Pound the Pavement for Peter – Atlanta, GA | Global Foundation For Peroxisomal Disorders
    Peter 2015 High School Robotics Team Creates Car for GFPD Kid GFPD Make a Wish Kid Donates Wish Categories Fundraising Events GFPD Families in the News GFPD Family Spotlight GFPD News GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps Pound the Pavement for Peter Atlanta GA The Global Foundation for Peroxisomal Disorders was very grateful to be the 2012 recipient of funds from Pound the Pavement for Peter and appreciative of the efforts by Peter s Pals the Atlanta Brookhaven community and the family and friends of Peter Amann Hopkins In its third year Pound the Pavement for Peter was a huge success with over 500 registered race participants forty Corporate Sponsors and forty two Family Sponsors The 2012 Pound the Pavement for Peter Honoree was Jackson Jinright a five year old Atlanta resident with a Peroxisome Biogenesis Disorder Zellweger Spectrum Disorder Funds from the race will be used to enhance the lives of children with Peroxisome Biogenesis Disorder Zellweger Spectrum Disorder PBD ZSD and their families as well as support the researchers passionate about finding treatments for this rare spectrum of disorders Pound the Pavement for

    Original URL path: http://www.thegfpd.org/pound-the-pavement-for-peter-april-14-2012-atlanta-ga (2015-03-27)
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  • Fundraising Events | Global Foundation For Peroxisomal Disorders
    a Caroline s Cart in their local grocery store http www turlockjournal com section 12 article 26844 We appreciate all of Carolina s efforts to improve the lives of children including those with PBD Carolina and her husband Jose also hold an annual event honoring the memories of their sons Diego and Adrian Read about last year s Dinner Dance http www thegfpd org diego and adrians 2nd annual dinner dance benefits gfpd Upcoming Ilan a thon 5k Race in the News May 14th 2014 The Baltimore Guide has written about the upcoming Ilan a thon 5k race The 2nd Annual Ilan a thon will be held on June 8 2014 in Baltimore s Patterson Park Take a look and pass it on http baltimoreguide com race to help children suffering from little known disease Get to Know 2014 Ilan a Thon Honoree Livi Menard May 8th 2014 by Jennifer Hazard of CutePotato com Recently I had the privilege of interviewing Jen Menard mother to this year s Ilan a thon honoree 3 year old Livi Menard As a mother of two and godmother to a 19 month old nephew with PBD Jen s thoughtful answers meant a great deal I m inspired by her honesty and her gentle way of spreading the Livi love around How did Livi become this year s honoree Mousumi Bose Ilan s mom asked if Livi would like to be the honoree while we were attending the GFPD Family Scientific conference in Nebraska last year What does the honor mean to your family I think having Livi and other PBD kids at the race helps participants see what their contribution means It s also so rewarding to see everyone come out to the race and show their support Livi is 3 years old What have you learned about PBD along the way The most helpful piece of information I have learned through our journey is PBD kids do not fit a mold We ve tried hard to ignore timelines and prognoses How did do you manage the weight of her diagnosis When we were told Livi was a Zellweger baby we basically prepared for her death and then we waited Some days I still feel like I m waiting Not to say that our family hasn t lived our days with Livi to the fullest because we have but her diagnosis is always a shadow hanging over us Any strange movement could be the beginning of her first seizure Or her sneezing this morning could turn into pneumonia that will ultimately take her from us It s an exhausting way to live but we try our best to keep things as normal as possible How did you explain Livi s diagnosis to her older sister Lila We ve been pretty honest with her It s been gradual since Lila was only three and a half when Livi was born She s always known Livi was sick That was blatantly obvious since Lila s best

    Original URL path: http://www.thegfpd.org/category/fundraising-events (2015-03-27)
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  • Heavy Cotton Unisex GFPD Logo Tshirt
    the News GFPD Family Spotlight GFPD News GFPD Newsletters Rare Disease Community News Research Updates Uncategorized Make a donation to help support our cause Every little bit helps Heavy Cotton Unisex GFPD Logo Tshirt GFPD logo on front 5 3 oz 100 preshrunk cotton jersey knit t shirt Euro style fit in neck shoulders and sleeves Rolled forward shoulders Price includes tax For international orders please contact us at orders

    Original URL path: http://www.thegfpd.org/products-page/product-category/heavy-cotton-unisex-gfpd-logo-tshirt (2015-03-27)
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